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Polycythemia

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ellen68007
ellen68007

I have a question for the most amazing and helpful friends on this forum. I have not posted for a while because my tests indicated I do not meet the criteria for Polycytemia Vera Ruba. I do however have secondary Polycythemia. I was just wondering if I still qualify to be part of this forum. I would like to be BUT not if I qualify to ask questions. I know this is a difficult question to answer but the fact remains I do have a blood disorder and it is Polycythemia. Let me know what your take is. I will accept your answers.

Ellen from Canada

0 likes, 17 replies

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  • harrishill1
    harrishill1 ellen68007

    Posted

    Hi Ellen. I have polycythemia Vera, because I tested positive for jak2 gene mutation. Those who do not test positive for jak2 gene mutation are considered to have polycythemia Rubra Vera. That means they have secondary polycythemia. There are a lot of sites that fully explain what secondary polycythemia is. Just type in ( secondary polycythemia) . The sites give an explanation of what to expect, the possible causes, etc. Hope that helps you to understand it.

    I have been on Hydroxyurea for 4 yrs now, and I have been living a normal life, exercising daily, weeding and planting, cleaning house. I admit that some days, I overdo it, if getting ready for company, for instance. I just have to rest for a day.I get a CBC once a month, and see the hematologist every three months. He is the best.

    good luck, and best wishes.

    harrishill1   

       

  • peter98873
    peter98873 ellen68007

    Posted

    Following my diagnosis of PV I needed only 6 monthly appointments at the cliniic for 2 to 3 years.  As the test results changed I needed 3 monthly visits and more latterly 6 weeks.  By this time I was prescribed Hydroxyurea (now hydroxycarbamide) daily, dosage dependant on blood count.  A number of years on this treatment it was found that the drug was becoming unsutable for me and following some tests and consultations in the periods that followed I was recommended for Ruxolitinib treatment.   I am still taking this drug and it appears to have been very beneficial in controlling my monthly blood count, plus an improvement in my general well-being.  There are a number of factors the doctors need take into account when ascertaining the drug dosage.  This varies from time to time as do the blood counts but now on Ruxolitinib it is stabilised at monthly visits and normal blood count readings. As I mentioned previously, each patient is differently affected by PV and will be treated independently from other sufferers, and rightly so.  Rather than suffering symptomatic PRV I have grogressed to MF and I am advised, this should remain so.  Leukaemia does not seem to be on the cards fortunately for me, and I envisage remaining on the current treatment  for some time, no hiccups anywhere.  I feel very sad for ItchyChris who seems to  have been dealt a poor hand   However, I do hope there is a change of luck here and that she will be well once more. Good wishes to you itchy Chris and Ellen, fortune favours the brave.
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